UK Keratoconus Self-Help and Support Association

Hi, its Becky. Saw the consultant for a second opinion. Three and a half hours later after a lot of various tests he confirmed that have KC in both eyes although right is much worse and also the one ive had hydrops in. Which is a lot better but the fluid is still on it and it feels very sore most of the time and also gritty sometimes, the later into the day and eve i get the worse it feels. Anyone else had that?

The staff at Centre for Sight, within the hospital, were all very nice to me, think they could see how scared I was feeling as one had done my pulse rate and it was 109, I had only been there ten minutes and they hadnt even put drops in my eyes yet !!

Dr Sheraz Daya was very suprised Id had Hydrops twice but as i pointed out someone posted who had it 4 times so guess some people get it more than others and some never, If you are in the later category my friends I hope you never go through this.

Anyway after the tests saw the consultant by this time I had been there three and a half hours had numerous drops in my eyes/one test after another, was impresssed by the throughness though, and was feeling totally sick and very very scared. He said my only option is a full thickness cornea transplant/graft in that eye. Think im just in shock, suppose its positive in that i know where i stand. Im so so scared. Im swinging wildly between being fairly calm and reasssuring myself lots are carried out every year and the sucess rates (or at least improvement in quality of life) is very high.And being so frightened I can hardly breathe. This eve Im posting because feeling very frightened.

Please if anyone has had it done and it willing to share with me or has msn and is prepared to talk get in touch.I am incredibly squemish though so please dont scare me, thanks!

Does anyone know anything about waiting lists?
hope everyone is well

sweetie I do appreciate your feeling scared, it's natural.
Cornea transplants are pretty good going as a procedure because you have a general anaesthetic so you're completely asleep. There's little pain typically after surgery, and your stay is short, 1-2 nights at the most. You will need to wear an eye shield at night, you just tape it on, do this for a few weeks. They will give one and some tape [you can get more tape from Boots]. Wear sunglasses during the day, mostly for added protection but also because initially the eye can be a sensitive to bright light.
You will need to put eye drops in each day, typically an antibiotic and a steroid to prevent rejection, then you'll be seen in the clinic each week initially. The stitches stay in for a few months and can either be removed a couple at a time in clinic under a local aneasthetic or sometimes they take the lot out in theatre.
Waiting lists vary, some people wait a few weeks to a few months for their graft. However the Hydrops will need to fully heal first, they prefer to wait till it's healed.
You keep posting here, we'll support you
Lx

Becky

Full thickness graft not as bad as you might think.

It is a big step and some like to talk it over with an impartial person, so have a look at Emotional Support

The idea of any surgery for KC is to make a surface that is easier for the vision to be corrected. My expectations when i had mine done 20 years ago was that I wanted vision that could be corrected. What I got eventually was perfect vision uncorrected. I am now back to wearing lenses, but then my graft is 20 years old and as we age many of us eventually need glasses so I consider things to be a great success.

Healing process for me was about 12 months. Sounds a long time, but after 3 months, vision was stable enough for glasses and the prescription was changed every now and then as further stitches were removed.

Operation itslef was less than an hour with one nights stay in hospital. Had regular drops wich soon reduce in frequency to just morning and night. There was some discomfort for a week or two, but for me no worse than when you first get used to contact lenses.

I have pm'd you my telephone number if you want to make a list of questions.

Regards

Gareth

Don't panic! It's such a lot for you to take in at one hospital visit! I've had corneal grafts in both eyes, it's not a quick fix but what a difference they have made to my life. You'll be fine. (((big hug))

I have not had a graft but I have had that panicky feeling! I had a panic attack just going for eye tests at one point.Its really hard.
My advice to you is keep talking, if I ever need a graft I would need surgically removed from my laptop cos I would never leave this site !
Good luck x

Sorry you are frightened......we have all been there. But, with a trust in your specialist you will do fine. KC is a problem, but compare it with some of the really nasty, life-threatening things you could have and it will seem like a minor inconvenience.....KC will never kill you. So, read up, study your condition, various treatment options, then step off and meet life head-on. Things will be better for you.

Piper